Celiac Rant: There’s No Such Thing as “a Little Celiac”

Forgive me community for I have sinned. It has been 4 months since posting my last “celiac rant”. There are 55 of them currently in my inbox. My goal is to post one per year for the next 55 years. And yes…I plan on living until 107. Don’t you? Anyway, let’s get to it.

If you are on social media at all, I’m sure you’ve seen this types of posts/comments:

I have celiac. Oh…is that a bagel? LOL!!

I drink regular beer and I feel fine.

My friend has celiac and he can cheat a little.

Celiac disease isn’t that bad. Stop being so dramatic.

I feel bad for celiacs that cheat. They don’t have the desire or willpower to treat themselves right. I DON’T feel bad for celiacs that cheat and then boast about it, like it’s some badge of courage. And I have zero patience for celiacs that cheat and then wonder why others also don’t cheat.

Add to that the general knowledge and lack of understanding/empathy for those with our wonderful disease and well…you’ve got a nice recipe from a rant from a fellow celiac. Rant away:

I happened across your page and found your Celiac Rants, and oh my goodness, just loved them! I’ve read a few of them since my diagnosis, but up until fairly recently, haven’t felt the need to rant.

Well, now I do.

I am SO fed up with the comments about “going off your diet for just one meal”, or “oh, I know someone who has trouble with gluten and she does organic spelt flour” or “oh, it’s not THAT bad.”

No, really, I can’t go off my “diet” for just one meal. You see, I’ve spent nights clutching my stomach in pain, while simultaneously wishing I could shove my head into a grinder in hopes of relieving the pounding migraine. Only to spend the next day never more than a step away from the bathroom. All because of accidental ingestion from cross contamination! So, no, thanks but no thanks, a slice of that delicious looking cheesecake, or a half of your delicious looking cheese danish is not worth the misery for who knows how long. And no, it’s not worth the damage I would be doing to my body.

It’s great your friend can have spelt flour! I’m genuinely glad when I hear people are able to find acceptable substitutes that don’t mean an entire lifestyle change. But, alas, no such luck for me. There’s no such thing as “a little Celiac”. I just have it. And it means no more gluten, in any form, ever again. But please, keep in mind, this is an autoimmune disease, not a food sensitivity, not a fad. It will never go away. It will never change. I will spend the rest of my life gluten free, and HOPEFULLY being able to live a somewhat normal life in our gluten inundated society.

Not that bad? Really? Who was it who had to deal with above mentioned head splitting migraine? And the stomach pain so bad I was almost convinced maybe it was labor and not stomach cramps? Or the explosive diarrhea the next day? Oh, that’s right. Me! Not you. I wouldn’t wish this on anyone. I can’t fault you entirely because you don’t get it. You don’t understand because you don’t have it or have a family member who does. But please, when I’m trying to educate you, don’t roll your eyes. Try and understand.

Wow, that really does feel better! Thanks for letting me rant Dude!!

Need to Vent?

I hate celiac. You hate celiac. We all hate celiac. With all that pent up anger, people need a place to vent.

Well…I invite you to lie on the Dude’s couch (figuratively speaking) and spew away. There’s just one rule: Once you’re done venting, you need to move forward and put the negative vibes on the back burner.
Positive energy brings positive results.

22 Comments

Gloria

Great rant!! After a few years I learned to tune it out. I just say NO and let my eyes glass over and my ears plug up. After 22 years of celiac I am tired of trying to educate people who think they know everything.

Leah

But there really are differences in severity. Anyone with celiac who eats a sandwich is insane, but I do not experience symptoms from CC and I *have also not suffered any ill health effects* (I am aware that “silent celiac” can be just as dangerous). I get my health checked regularly and despite exposing myself to possible CC almost every time I go out to eat, I am in great shape. Compare this to someone who is sick for weeks after sharing the wrong butter knife with someone, and it seems clear that there are indeed shades of celiac.

In my humble opinion, all celiacs have a responsibility to protect the community. So no matter what symptoms you may or may not experience, by taking big risks, it says to the world that all celiacs can take that risk. Does that make sense?

Luna

I heard the same story from a church member. Then I heard he had intestinal cancer. So, be careful. You might be harming yourself badly. In the meantime, you’re making the rest of us look like paranoid nutjobs.

Cali Celiac

My father died from EATL cancer (Enteropathy-associated T-cell lymphoma) of the small intestine and though he was not diagnosed correctly it is clear to me he had CD which led to the cancer. I was not diagnosed until age 58 despite seeing a doctor for stomach issues for the first time at age 8, followed by years of doctors treating me for acid reflux and completely missing CD until I was anemic, having severe gut pain, occult blood and a host of other CD symptoms. You may think you are not being affected until symptoms crop up and you find out it’s too late for effective treatment, like my father did. If you are diagnosed CD and continue to eat gluten you are playing Russian roulette with your life. Not too smart.

My grandmother hates doctors, but about 10 years ago, she had intestinal cancer. She had “stomach issues” for as long as I can remember. She is now without a good portion of her intestines. She is VERY private and would never discuss any medical issues with anyone but my grandfather, so when I was diagnosed, I was nuts to think it could have come from her side of the family. One of her sitters (she’s 91 and lives alone) noticed that she seemed to have issues whenever she eats bread. But, why believe someone who sees you everyday and is your caretaker when you love a grilled cheese sandwich and canned french onion soup (eyeroll).

I am thankful to know that I have Celiac. I will gladly take my gluten free treatment plan over the abundance of radiation that left my grandmother with a broken pelvis any day. I don’t feel one bit sorry about my situation.

John

Given human variability, and the complex genetics of Celiac disease, I would be very surprised if there were not differences in sensitivity. We accept that people have all sorts of differing symptoms. It is now known that Celiac may not manifest until late in life, in response to a trauma. So, I think it entirely possible that some Celiacs may be able to tolerate small amounts of contamination, amounts that would cause big trouble for others.

That said, I hope they don’t let servers or other people know in a way that would reduce the sensitivity to trace amounts that affects so many of us.

Jen

I just had to go off the rail on a very large appliance company who pushed my delivery date on my refrigerator two weeks. We just bought a new house, therefore no fridge. I had to try and explain to them about my Celiac disease and that I can’t just go out to eat for almost every meal for two weeks and they pretty much laughed at me. I HATE trying to explain to people the severity of this disease and being mocked or laughed at. I know some of it is ignorance but some of it is also because of those people who cheat or don’t even have an issue with gluten but say they are gluten free and cheat ALL the time. I was able to get a loaner fridge from the place we bought the fridge from. BUT I have to force them to give me a brand new one, due to our disease.

Jacqueline

Because there is so much education that still needs to be done.
Because you are a terrific person who cares about other people.
It really doesn’t matter that there will always be people who “don’t get it”, what matters is you will give so many others hope and help.
I wish you Happy Holidays and a renewal of your mission in peace.

Molly Kate Russell

Without you, some of us newbies would be lost. Regardless of how well others receive the information, those of us living GF need the education, maybe some day the others will catch up.

Going GF is one of the hardest things I have had to do in life. Nursing school was a cake walk compared to this. Much like the person posted above, it sucks having to explain the severity of the situation. Its humiliating to be accidentally glutened when you are trying to survive “out there” only to find yourself doing a mad dash to the bathroom, praying you’re alone so that you can blow it out of both ends simultaneously without an audible audience.

You do this because it is a situation you can’t live without… and neither can we. Thank you for your dedication to this forum and for being an advocate for our condition, it is truly appreciated.

Dee

Dee

I spent 50 years feeling like crap! At about 50 years, I couldn’t take it anymore and attempted suicide, which landed me in ICU for 4 days on life support. As tears roll down my face I think of how much you have helped and encourages me and others; I thank you for your humor, your wisdom and your knowledge, while eating my breakfast of meatloaf filled with veggies, riced cauliflower, and kale. Every day that I feel well, I have you to thank. Because of you, I now eat unprocessed foods most of the time and the suicidal thoughts are now rare. In essence, you (and this support group) saved my life. I know I am just one person, but I hope you know how important you are to SO many of us!

Dee

Jessica

Saying you have a little bit of celiac disease is as silly as saying you’re a little bit pregnant. And whether or not these folks who “cheat” have symptoms, they are damaging their bodies. I’m personally grateful that my daughter has severe symptoms from even a little cross contamination. It means she has no interest in taking any risks.

Cali Celiac

I can so relate to this rant. Just last week I was trying to explain to an engineer I work with how a bread crumb can make me sick and he physically rolled his eyes at me and gave an audible, sarcastic “really”. Some days I just want to snap their ignorant heads off . I try to educate whenever I can, but I get tired of telling people who are not listening, don’t care or forget everything I said in 2 minutes.

On a positive note after 15 months GF I am beginning to come out of the fog and depression I’ve been in for years. I had forgotten what clear thinking and happiness are.

Hey there Dude, I am so glad to see you back from vacation and once again bringing some sanity to the world of this gluten free lifestyle. 1) I bought two of your books- gave one away as a raffle prize and am reading the other- way to go! Good job! You really bring a sense of clarity to this world but also a realistic view point! 2) would you come to CT in April to appear at gf EXPO- maybe tie it into a visit to NYC? Curious- let me know! 3) I came into this world more than ten years ago as NCSG- not celiac , but that is where my heart is- bringing comfort and information to this small group of people, lending my voice and big mouth to raising awareness of this dreaded autoimmune disease- sure there are worse illnesses from which to suffer- my goal is to help people realize at least they are finally diagnosed and can live a somewhat normal life- it’s “only” diet change not the end of the world!

I went to a party where they had finger sandwiches. They were kind of enough to bring a gf bun (unfortunately, I could not consume because I have an egg issue, too) which was sooooo very sweet. But – then suggested I pull the meat off the finger sandwiches and put it on the bun instead.

It’s frustrating when others don’t realize that the contamination alone will set off my intolerance, it doesn’t take much. I had pepperoni once that sat on a plate mixed in with soft pretzels and got sick; it’s wild.

So, no thanks, I won’t just pull the bread off and swap the bread, or brush aside the “topping” on a dish that is gluten to eat what is underneath (Thanksgiving!). And no, just
a few breadcrumbs in the meatloaf will make me not consume it. It’s not the quantity, but any amount which is difficult to get others to understand.

Who is Gluten Dude??

Somebody who's been gluten-free since 2007 due to a diagnosis of Celiac disease, where the doc said my numbers were "off the charts". Someone who can steer you in the right direction when it comes to going gluten-free. And someone who will always give you the naked truth about going gluten free.

I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.